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Kaileigh's Story
"Kaileigh was diagnosed within days after her birth..."
When she was born she was taken via C-section due to a drop in her heart rate and so we had an emergency C-section done. She came out with a mecconium aspiration and had to be air lifted to our provinces children's hospital. Once there they ran a series of tests, etc on Kaileigh and that is when they found that she had Congenital CMV.
Kaileigh in her 11 years with us had about 10 different surgeries. The first series of surgeries she had were on her gut, as the motility and functioning were not normal, and she also had severe reflux so due to that she had a plyoralplasty, Nissen Fundoplication, J-tube insertion and a G-tube insertion. Then when she has a severe aspiration when she was about 4 years old due to a trial of a G-tube feed (the G-tube was only used a few times with same issue everytime). She had the G-tube removed and still continued on with her J-tube.
Then her next surgeries were due to her growth and body changes, so she had a Bilateral Hamstring release and was casted for 6 weeks right from her groin to her feet. Then she had her hip done and at present the correct surgery is slipping my mind but it was due to her hip becoming dislocated. Then her last surgery was a postier and anterior spinal augmentation and fusion due to curvature of her spine from scoliosis. She also had her adenoids out due to airway obstruction. She also had a few minor procedures done as well that required her to be under sedation.
Due to Kaileigh's seizure disorder, she had been on a large amount of different cocktails of medications. If I had to gauge it for seizures alone, she was easily on at least 20 different medications in her 11 years. She was also trialed on the Ketogenic diet which worked amazing for her seizure disorder, but due to the fact that it had 1% daily intake of lactose, she had to discontinue it as she was extremely lactose intolerant.
With her gut and reflux problems, she had been on roughly 10 different medications for that as well. She also had nebulizer medications and puffers to help with airway issues and breathing difficulties. She also was on numerous different medications throughout the years as well due to different issues from time to time.
Kaileigh had the following issues: hearing impaired, profound in left ear and severe to profound in the right ear, vision impairment, seizure disorder, gut/motility/reflux issues, J-tube fed--nothing oral at all, airway obstruction with assistance of CPAP for night time and rest, and a lot of ortho issues. Kaileigh was fully dependent of all care.
It is too soon after my loss to be able to sit and tell her story. I will in time but please know that CMV can be deadly, I know as it took my daughter. It is sad to say that CMV can be something as simple as a learning disorder or as painful as the loss of our child.
- Shared by her mother, Shannon